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Chicago Trader to Run Across Illinois to Raise Awareness for Rett Syndrome

By Justin Breen | January 10, 2014 8:41am
 Bill Babiarz will undertake a 150-mile run across the state to raise awareness for a rare syndrome his 4-year-old daughter Cameron suffers from. Cameron (Cammy Can) was diagnosed with Rett Syndrome when she was 20 months old.
Run Across Illinois
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DOWNTOWN — Bill Babiarz admits he's a bit nervous to run 150 miles across Illinois.

But the cause behind the run, he said, will make it well worth the effort.

From March 12-16, Babiarz, an options trader Downtown, will run west to east across the state to raise awareness and money for the fight against Rett syndrome — a rare developmental disorder from which his 4-year-old daughter Cameron suffers. Rett prevents Cameron from speaking, walking or using her hands.

“I run in hopes that one day Cammy will run alongside me,” Babiarz said. “The long distance is symbolic of how difficult it is for Cammy to take just one step, something almost all of us take for granted.”

Babiarz's run will begin in Fulton, Ill., near the Mississippi River and conclude at Buckingham Fountain in Grant Park. His longest trek will be a 38-mile run from Sterling to Rochelle.

That "will be the longest run of my life in one day by far," said Babiarz, who has completed four marathons, the last in 2006. "But Cammy works her butt off every day in therapies, and it's nothing compared to what she does."

While running, Babiarz will be carrying a flag for the International Rett Syndrome Foundation. The official course hasn't been finalized, but he likely will be taking Illinois 38, U.S. 30 and two-lane county roads for a good portion of his run.

He came up with the idea for the statewide run after hearing about a friend who ran from Florida to Chicago to raise awareness for cerebral palsy.

Bill and his wife, Jackie, have been active fundraisers to find a cure for Rett syndrome, which was discovered in 1954. Last year, they raised $43,000 for the foundation during an event at Sidebar Downtown, and a similar outing is planned for March 22 at the same locale.

The Babiarzes also started the "Cammy Can" Facebook page, which features Cammy's accomplishments and pictures of celebrities, including Cubs pitcher Jeff Samardzija and Bears kicker Robbie Gould, holding a superhero-like logo featuring a cartoon version of Cammy.

Last summer, Cammy's family created a 24-item bucket list for her, which included touching the Stanley Cup. That task was checked off the list when Blackhawks CEO and President John McDonough brought Lord Stanley's chalice to Brooks Park in Edison Park.

There, McDonough spent a few precious moments with Cammy — at one point kissing her on the forehead — as well as Jackie, Bill, and their youngest daughter, 2-year-old Ryan. The moment also was featured on the Blackhawks' documentary "17 Seconds."

The Babiarzes, who met at the University of Illinois, lived in Bucktown before moving to west suburban Wheaton in 2010 so Cammy would have a backyard to play in. For the first 1½ years of her life, Cammy was like any normal child, able to feed herself and say "mama, dada and babba."

But Rett syndrome — which affects about 1 in 10,000 children, mostly girls — caused a massive, extremely quick regression. Girls affected by the syndrome can expect to live to middle age.

Cammy has full cognitive ability, but she can't eat without assistance, and her only way of communicating is by using "Eye gaze," an eye-tracking device.

"All we ever hoped for was to spread awareness," Jackie, an Edgebrook native, said last year. "That's the only thing we have control over, to feel like we're doing what we can to help her."